Monday, August 5, 2013

Some ME/CFS projects in waiting

Ever since I started this blog, I've felt that I had at least one other ME/CFS-related project in me. Whether it's an advocacy project, or some other kind of community building activity, I feel like I have something else to give. Of course, I'm taking the long view on this, and not necessarily going to dive into something right this instant. Then again, if the stars align, maybe I will. For now I just want to get down a few of my ideas in writing.

1. An ME/CFS Podcast or Webcast
At first this idea seemed daunting—like it would require an immense amount of technical know-how and expensive equipment. But after a little research, I'm now convinced that it could be done fairly cheaply and with minimum technical skill. There are apparently several brands of inexpensive software to help amateurs produce a podcast with relative ease.

I envision it working like this: First, I would not attempt it alone. I would want at least one co-host, but preferably two. A mix of genders would be best. We would meet online remotely for the show's taping, which amounts to a glorified conference call but with better audio quality. We would produce one show per month—any more is unreasonable to expect of chronically ill people.

Before each show's taping, the hosts would circulate and collaborate on an agenda. The show would have three segments. In the first segment, the hosts read and discuss a few of the major headlines from the ME/CFS world from the previous month. The banter would be a mix of informative (based on the hosts' research), but mostly personal perspective and friendly debate among the hosts. As the show grows, we would try to bring in occasional guests for interviews.

The second segment would raise topics of a more "social support" variety. There are literally endless numbers of life-with-ME type topics that could be gleaned right from the ME/CFS message boards. In the final segment, we would read select listener emails and discuss whatever topics the listeners raised.

The overall idea would be to generate a good mix of information and entertainment content - especially for those PWME's who have visual or neurological issues that make extended computer use difficult. Obviously, there are a number of logistical hurdles that would have to be overcome to get this project going, but with the right partners, I think it would be a fun, worthwhile, and hopefully valued by a certain segment of our community.

It also occurred to me that, rather than doing a true "podcast," the show might be accessible to a wider audience simply uploading it as an audio file to YouTube.

2. Annual Awards
As far as I know, the ME/CFS community doesn't have any awards to....um...award. I've seen a few bloggers who have won general "health blogger" awards, but nothing for our community specifically. In my view, the awards wouldn't have to be limited to just bloggers. We could award researchers, journalists, foundations, doctors...whatever we can think of.

I haven't decided yet how the nomination process would work (maybe open submission by email), but I would want the final voting to be open to all members of the community. That way, the winners can have the satisfaction of knowing that they were chosen by the community at large. The website could briefly profile all of the nominees before voting begins.

I wouldn't want to present the awards, alone, from my humble little blog. Rather, I'd either set up a separate foundation with it's own website, or partner with a site that has more name recognition in the community. As for the name of the awards, most likely, we might simply take the name of my partner's organization and add an "s" to the end, ala Emmys, Grammys, Tonys, etc.

No money would come with the awards—just an honor. At first, the awards might not mean much to the recipients, but as the years pass, I hope the name recognition would catch on and the recipients would receive it with pride.

Off the top of my head, a few categories to consider:

-Achievement in ME/CFS research
-Excellence in ME/CFS patient care (by a doctor or other health care professional)
-Patient advocate of the year
-Blog post of the year (journalistic style)
-Blog post of the year (personal/opinion)

I haven't decided yet if the awards should include some sort of tangible plaque or trophy, or if we would simply inform the winners of their recognition and maybe forward an electronic badge or emblem that can be posted on their website. I'm leaning toward the latter because, well, it's free.

3. Supplement Exchange
I of course can't take credit for this idea. It has been talked about on forums a few times that I can remember. But as far as I know, it has never gone past the "idea" stage.

There are an enormous number of us with large boxes of unused supplements at home. Often we've tried one or two capsules from a $30 bottle and realized we don't react well. If that occurs two, three, four or more times, suddenly we've got a lot of money tied up in inventory. Wouldn't it be great if we could all exchange our inventories for something else we can use?

Ideally, we'd want a separate website just for this function, as opposed to a messy sub-forum or some other site that's not tailored to this particular use. Each user has an account profile, which they populate with the names, expiration dates, and approximate quantity remaining of each spare supplement they have. If one is looking to make a trade, they log in, search for someone with the supplement they need and propose a trade. Both parties simply pay to ship the supplement to the other person.

Naturally, there would be a temptation by some to list and exchange prescription drugs, but for legal reason, this would not be allowed.

A downside to this idea is that I have absolutely no computer skills, so I'm really just posting this in the hopes that someone might take this idea and run with it!

Wow, this is great. All of a sudden I'm meeting other patients from my neck of the woods.

Let me know how I can get ahold of you. You can put your email address in a reply message and I will NOT publish the reply. All comments on my blog have to be approved by me first, so I simply don't click "approve" so that your message is not made public.

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DISCLAIMER: I am not a doctor and have no medical training. Nothing in this blog should be construed as medical advice. This blog simply recounts my personal experiences and, at times, summarizes research from other sources. I can't verify the accuracy of these other sources. Never rely on anything you read here in making your own medical decisions. Always consult a doctor.

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What is Myalgic Encephalomyelitis (ME)?

The clinical definition of ME is complicated, and the symptoms are many. It is a "multi-system disorder" that affects a person's immune system, hormones, nervous system, and energy (at the cellular level). I prefer to explain, simply, that it feels like I have the flu. Every single day. This is an oversimplification, but it's often the best way to explain it to a healthy person.

About Me

I came down with ME in June, 2011. I was diagnosed six months later. This blog tracks my progress; my successes and failures along the path to (hopefully) sustained remission.
I live with my wife and two young daughters in Southern California.